Response to some concerns about neurodiversity paradigm

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Dvdz
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10 Sep 2019, 9:29 am

Mona Pereth wrote:
Dvdz wrote:
How exactly are you coming to the conclusion that most autism research is about eradicating ASD, total cure, etc? Which studies did you look at?

I don't have time to answer this question exhaustively, so I'll just give a couple of examples of relevant things I have observed. I'll point out other examples later.

I can't really quantify this, but, among the many biological studies I've looked at over the past year or so, it seems that a disproportionately large number of them are still trying to come up with some unifying theory of autism, even though it's widely recognized that "autism" is really many different, widely varying conditions that all just happen to look similar from an NT point of view. Apparently, research focused on trying to find similar underlying biological mechanisms for "autism" in general is still what gets the most funding. This strongly suggests that the holy grail for those who fund the research is still a single big-bang "cure."

My point is not that underlying similar mechanisms of "autism" in general shouldn't be sought at all, but they should cease to be as high a priority as they apparently are now. If I were in charge of autism biology research funding, at least 30% of the funding would go into figuring out why the most severely disabled autistic people can't learn language, and at least another 30% would focus on specific problems of many autistic people across the spectrum (and some non-autistic people too), e.g. finding ways to tamp down extreme sensory sensitivities, improve sensory integration, or improve executive functioning.

Edit: For another, different, very recent example of some research news implying (without explicitly stating) the holy grail of a one-size-fits-all "cure" for autism in general, see the Spectrum News article referenced in the thread Studies of autism treatments lack standard yardsticks, and see my comments in that thread.


Autism Speaks has a handy website where you can see where all their grants went to (https://science.grants.autismspeaks.org/search/).

Now, if you search for all science grants in 2019, both active and completed, with the maximum distance setting:
Image

And you sort the results by descending amount, you will see the top 5, representing more than 56% of the science funding Autism Speaks gave out in 2019:

1. PEERS© for Careers: An evidence-based social skills treatment for post-secondary employment
2. Developing a Gold Standard for Tracking Adult Functional Outcomes in Autism Spectrum Disorder
3. Achieving Steady Work among Adults with Autism through Specialized Employment Program
4. Demonstrating the effects of a primary care center designed for transition-aged youth with autism
5. New insights on the role of cannabidiol in autism spectrum disorder: from synapse to behavior

If you do the same search but with the addition of the Biology topic:

1. New insights on the role of cannabidiol in autism spectrum disorder: from synapse to behavior
2. Transition to adulthood and factors impacting well-being in women with autism
3. The role of MEF2C in microglial immune activation in Autism Spectrum Disorder
4. Investigating the effects of disrupting Autism-associated gene SCN2A using human iPS-derived neurons
5. Maternal immune activation, microglia and microbiota as key players in Autism Spectrum Disorder

For an organisation that is supposedly trying to find a cure, they spent more than 50% of their total science budget on adult research. Furthermore, look at the biology research; the effects of cannabidiol, figuring out what some genes are doing, looking at environmental factors, looking at brains of women to figure out camouflaging and alexithymia. I don't see any evidence of a search for an autistic theory of everything.

I've also read that thread about the spectrum news article that you linked. I don't understand your reasoning of how a standard yardstick would somehow lead to a "one-size-fits-all cure". In fact, it would be the opposite. A standard yardstick would enable many options for treatments, or even the lack thereof, simply because you would be able to measure the effectiveness of any method/or non-method with this standard.

Unless you provide some links to studies you've read, I'm afraid I really can't see how you are getting to your conclusions.



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10 Sep 2019, 12:09 pm

As I already noted in another thread here, it would appear that Autism Speaks's research funding priorities have gotten much better recently, and are now much better than the priorities of various other autism research funding sources. I'll dig up some examples of the latter later.


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Mona Pereth
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10 Sep 2019, 3:29 pm

An example of the continuing search for a unifying theory of autism is New approaches to study the genetics of autism spectrum disorder may lead to new therapies, Canadian Association for Neuroscience, 24-May-2019:

Quote:
More than a thousand mutations and other forms of genetic variation affecting several hundred genes have been linked to ASD. Given this large number, analyzing each gene on its own is not a feasible approach. To make sense of this data, one approach is to determine whether multiple risk genes function in common signaling pathways, which act as "hubs" where risk genes converge. To identify such hubs or networks, Dr. Karun Singh, from McMaster's University studies proteins in mouse models of ASD, but also in cells taken from patients and induced to grow in petri dishes, called induce pluripotent stem cells or iPSCs. By looking at how the proteins taken from cells carrying ASD associated mutations interact, his team has been able to identify specific signaling pathways affected by ASD. Targeting of these networks may lead to new therapies for ASD.

Dr. Catharine Rankin, from the University of British Columbia, presented data obtained by analyzing ASD-associated genes in a much simpler species, the nematode worm C. elegans. Her team tested 87 different strains of worms, each carrying a mutation in genes similar to those found in ASD-associated genes. Analysis of the morphology, locomotion, sensitivity and habituation, which is the simplest form of learning, in these worms by an automated system revealed certain genes that caused strikingly similar effect on the worms. Further analysis revealed these similarities resulted from previously undescribed interactions between the affected genes.

(As far as I can tell, the relevant research paper by Dr. Karun Singh has not been published yet, or at least I couldn't find anything about it on the web, so we don't yet how many different genetic variants of human ASD actually got included in his study, or how common the "common signaling pathways" actually are among those variants. Here is a paper about Dr. Catharine Rankin's research, and here is a Nov. 2018 Spectrum News article.)

Also regarding the hullabaloo about suranim, according to the Spectrum News article Doubt greets reports of suramin’s promise for treating autism by Hannah Furfaro, 15 June 2017:

Quote:
Lead researcher Robert Naviaux says the trial wasn’t intended to test suramin for treating autism. Instead, he says, it was meant to test whether suramin’s known mechanism of action — blocking receptors involved in the stress response — is important in the condition.

“A lot of people mistakenly think that our study was about suramin; it was not,” says Naviaux, professor of genetics at University of California, San Diego. “Our study was designed as a first test of a new unifying hypothesis for the cause and treatment of autism.”


EDIT: Looking through the Spectrum News archives, I notice that on May 1, 2019, they published a bunch of articles about other, older attempts at a unifying theory of autism, a total of six such theories:

- The signaling imbalance theory of autism, explained
- The female protective effect, explained
- The extreme male brain, explained
- The predictive coding theory of autism, explained
- Serotonin’s link to autism, explained
- The connectivity theory of autism, explained

There is also a disunifying theory: The multiple hits theory of autism, explained. This one seems to me like a no-brainer, given the huge variety of autism-related genetic variations and mutations.


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Last edited by Mona Pereth on 10 Sep 2019, 7:05 pm, edited 6 times in total.

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10 Sep 2019, 4:05 pm

I’m going to be winding down my commitment to this particular thread for now since I have said mostly all that I needed to say.

I think i can say with absolute certainty that collectively Neurodiversity are anti cure in principle regardless of if there ever was one.

This extends right across the spectrum to severe autism.

ND just provides vague, UNSCIENTIFICALLY PROVEN answers mainly related to “education” to those who are profoundly disabled many with missing or duplicated genes. But they reject any potential invasive medical research regardless of effectiveness if it risks “curing” their Autism.

One link I posted rather than a "Twitter storm", was an article showing the kind of bullying, cult like behaviour present among many in ND, highlighting why many in the quite majority wouldn't want these types taking over the future of their diagnosis. The other highlighting why many are leaving or not following ND. Of course the tragedy is many are unable to have an opinion at all because of the severity of what many in ND just call a natural variance.

Of course, I’m not a scientist and only gave my own personal non expert view on the matter of treatments, but many organisations with big teams of experts, including scientists think differently & often they use their own private resources to do so, as sometimes said "putting their money where their mouth is", doing it with a view that medical treatments for autism is certainly a realistic goal.


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10 Sep 2019, 5:21 pm

carlos55 wrote:
ND just provides vague, UNSCIENTIFICALLY PROVEN answers mainly related to “education” to those who are profoundly disabled many with missing or duplicated genes. But they reject any potential invasive medical research regardless of effectiveness if it risks “curing” their Autism.

There should be more research into education and cognitive development. There is indeed "scientifically proven" reason to hope that this would be a fruitful direction of research for many (though perhaps not all) severely disabled autistic children. According to the Spectrum News article Words say little about cognitive abilities in autism, 5 September 2016:

Quote:
Nearly half of children with autism who speak few or no words have cognitive skills that far exceed their verbal abilities, according to the largest study of so-called ‘minimally verbal’ children with autism to date1. The findings call into question the widespread assumption that children with autism who have severe difficulty with speech also have low intelligence.

“What I think is really interesting is that among children who have very limited levels of language, there is more cognitive variability than you might expect,” says lead investigator Vanessa Bal, assistant professor of psychiatry at the University of California, San Francisco.

Besides cognitive development, another important area of autism research that deserves much more attention than it's getting now is the motor difficulties of many autistic people. According to the Spectrum News article Motor difficulties forecast language troubles in autism, 26 August 2019:

Quote:
The results also add to mounting evidence linking motor abilities to language development in children with autism. And they held up when the researchers repeated their analysis using an independent dataset collected by another team.

“Miraculously, across the samples and across the measures, [we] found the same thing,” Lord says.

The original quote, above, contained a link to an older Spectrum News article, Early motor problems linked to language delays in autism, 5 February 2016.

Back to the August 2019 article:

Quote:
“We don’t know exactly what this means,” Lord says.

One possibility is that children with fine-motor difficulties have trouble moving the muscles and body parts required for speech. Another is that minimally verbal children who seem to have motor skill problems may instead simply have difficulties imitating others, a skill that is required to successfully complete many tests of fine motor skills.

I would guess the former possibility, at least in many (though perhaps not all) cases: "that children with fine-motor difficulties have trouble moving the muscles and body parts required for speech." This is something that has been pointed out for decades now by various non-speaking autistic bloggers who are able to write/type. It's a real shame that scientists are only now finally getting around to just barely beginning to take this possibility seriously.

carlos55 wrote:
One link I posted rather than a "Twitter storm", was an article showing the kind of bullying, cult like behaviour present among many in ND, highlighting why many in the quite majority wouldn't want these types taking over the future of their diagnosis.

What the article in fact showed was indeed a Twitter war. "Bullying, cult like behaviour" is common on Twitter among advocates of just about any side of just about any controversy. Of course the article's intent was to single out neurodiversity proponents, but that's just unfair, as I've explained.


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Last edited by Mona Pereth on 10 Sep 2019, 7:23 pm, edited 1 time in total.

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10 Sep 2019, 6:20 pm

That September 2016 article is interesting . It suggests there's a lot of untapped potential in some children who may have been written off as cognitively low functioning .

I'm at the opposite extreme , ie very high verbal intelligence and 'borderline' non-verbal intelligence . Without a shadow of a doubt more than a few of those supposedly unintelligent children and adults could wipe the floor with me non-verbally.



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10 Sep 2019, 6:26 pm

Mona Pereth wrote:
As I already noted in another thread here, it would appear that Autism Speaks's research funding priorities have gotten much better recently, and are now much better than the priorities of various other autism research funding sources. I'll dig up some examples of the latter later.

While I agree the Autism Speaks is not nearly the completely hostile entity it was a decade ago we need some caution here. What we are looking at is what Autism Speaks wants us to look at. Their funding needs to be investigated by professional journalists or investigators. They need to be treated with the same skepticism by the media as other charities. So far they have mostly treated with kid gloves and often as the Autism authority. I suspect it is because it was founded by Bob Wright former chairmen of NBC, one of their own and personally well regarded.


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10 Sep 2019, 8:13 pm

At the risk of being repetitive, what we need to do is stop trying to make low-functioning individuals NT 'normal' and instead make them high-functioning AS. This should be the goal in education and in all other areas as well.



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10 Sep 2019, 8:28 pm

Poking around on Spectrum News, I found a few especially interesting articles:

1) How studying sleep in animals could unearth autism’s roots, 3 September 2019. Nice to know that SOME researchers are FINALLY paying attention to our sleep problems, a topic rarely looked at. Too bad they apparently have to justify it in terms of yet another unifying theory of autism. ("The commonality suggests that sleep problems are part of autism’s underlying biology and may even contribute to the altered brain structure and activity seen in autistic people.") But I agree that it's more likely to be one of the causes, rather than a result, of at least some of our other problems. (The article also says, "Sleep problems in autistic people were initially thought to be a result of behavioral issues associated with the condition." WTF????)

2) Drugs that calm ‘touch neurons’ may ease autism traits, 8 August 2019. It's probably good that someone is looking into a way to ease extreme touch sensitivities, regardless of whether it "may ease" other "autism traits" -- although it probably would indeed result in less obvious "autism traits" simply by giving the person one less thing to worry about, if nothing else. Perhaps it might also benefit some non-autistic people with sensory processing disorder, although the article doesn't mention such people.

Anyhow it's good to see some research focused on specific concrete problems of many autistic people, rather than on what feels to many of us like attempts to turn our brains upside down and inside out.

It would be nice if there were more such research.

It would also be nice if such research could be considered justified on the mere grounds that it would improve a lot of autistic people's lives, rather than trying to hint that it might be a cure for autism per se. (I assume that the latter phrasing is necessary in order to appeal to the funding agencies?)


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Last edited by Mona Pereth on 10 Sep 2019, 10:40 pm, edited 8 times in total.

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10 Sep 2019, 8:33 pm

Archmage Arcane wrote:
At the risk of being repetitive, what we need to do is stop trying to make low-functioning individuals NT 'normal' and instead make them high-functioning AS. This should be the goal in education and in all other areas as well.

Agreed. It is highly unlikely that any "cure" for the most severely disabled autistic people could make them completely NT. So they'll still need civil rights. They'll still need autistic-friendly workplaces. They'll still need a supportive community. And, if "cured" as children, they'll still need their cognitive development to be encouraged and focused on more than it is now.


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10 Sep 2019, 8:48 pm

Mona Pereth wrote:
Archmage Arcane wrote:
At the risk of being repetitive, what we need to do is stop trying to make low-functioning individuals NT 'normal' and instead make them high-functioning AS. This should be the goal in education and in all other areas as well.

Agreed. It is highly unlikely that any "cure" for the most severely disabled autistic people could make them completely NT. So they'll still need civil rights. They'll still need autistic-friendly workplaces. They'll still need a supportive community.


I need an autistic-friendly workplace, a more supportive community and and end to discrimination in hiring. We all need civil rights.

As it is, I lucked out on landing at a place where I can work productively 18 hours a week. There is, however, a sort of glass ceiling for me when it comes to full-time employment. I'd like that to change.

There are currently zero services in this area for high-functioning adults. That also needs to change. Globally.



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11 Sep 2019, 6:47 am

Mona Pereth wrote:
An example of the continuing search for a unifying theory of autism is New approaches to study the genetics of autism spectrum disorder may lead to new therapies, Canadian Association for Neuroscience, 24-May-2019:


I read the article and I am having trouble seeing how it is an example of the continuing search for a unifying theory of autism.

Quote:
One key to understanding and ultimately treating ASD is to identify common molecular mechanisms underlying this genetically heterogeneous disorder.


Now, if the quote had been: "... is to identify a common molecular mechanism", I would have gotten where you are coming from.

Quote:
When KCC2 fails to work, inhibitory neurotransmission (through a neurotransmitter called GABA) switches to being excitatory. Breakdown of GABA inhibition is a hallmark of abnormal brain activity in conditions such as epilepsy, pain and some forms of autism.

Regulation of KCC2 therefore appears as a valid target for treatment of ASD.


The last sentence might seem to agree with your point, but if you read it in the context of the previous sentences, it seems clear that they meant that it appears as a valid target for treatment for only some forms of ASD.

Even in section you quoted, it says "common signaling pathways", i.e. more than one.

Quote:
By using a range of different approaches, Drs. Woodin, Singh, Rankin and Haas have increased our understanding of the genetic underpinnings of autism spectrum disorder. These studies pave the way to the identification of new potential therapeutic targets to treat this disorder.


Notice that it says underpinnings, not underpinning.

How exactly are you reading that article and reaching your conclusion?



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11 Sep 2019, 12:15 pm

Dvdz wrote:
Mona Pereth wrote:
An example of the continuing search for a unifying theory of autism is New approaches to study the genetics of autism spectrum disorder may lead to new therapies, Canadian Association for Neuroscience, 24-May-2019:


I read the article and I am having trouble seeing how it is an example of the continuing search for a unifying theory of autism.

Quote:
One key to understanding and ultimately treating ASD is to identify common molecular mechanisms underlying this genetically heterogeneous disorder.


Now, if the quote had been: "... is to identify a common molecular mechanism", I would have gotten where you are coming from.

Quote:
When KCC2 fails to work, inhibitory neurotransmission (through a neurotransmitter called GABA) switches to being excitatory. Breakdown of GABA inhibition is a hallmark of abnormal brain activity in conditions such as epilepsy, pain and some forms of autism.

Regulation of KCC2 therefore appears as a valid target for treatment of ASD.


The last sentence might seem to agree with your point, but if you read it in the context of the previous sentences, it seems clear that they meant that it appears as a valid target for treatment for only some forms of ASD.

The sentence you quoted is from the description of the work of Melanie Woodin, not one of the two researchers I mentioned, Karun Singh and Catharine Rankin, whose work is described more ambiguously in that article.

However, looking more closely at another article about Dr. Rankin's research (the Spectrum News article I linked to), I see that you are correct that it's not a unifying theory for all of autism either, just an attempt to identify groups of mutations with similar manifestations.

Last night I spent quite a bit of time poking around through the Spectrum News archive for the past four months and found nothing there about any new attempts at unifying theories except for (sort of) Philippe Mourrain's sleep theory (not quite a unifying theory, but the closest thing to it within the past several months, apparently -- see link earlier in this thread), although I found a bunch of articles published in May reviewing older attempts at unifying theories.

Hopefully this means that the autism biological research establishment has finally given up on the idea of trying to come up with a single unifying theory of autism, and that Robert Naviaux's 2017 research (which he explicitly described as an attempt at a unifying theory -- see Spectrum News quote and link earlier in this thread) was one of the last gasps of this goal.

Still, however, I noticed that the headlines of news articles about autism research, even in Spectrum News of all places, are often worded in such a way as to make it seem like they are talking about autism in general, as an alleged single unified thing, even when they aren't.


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Last edited by Mona Pereth on 11 Sep 2019, 1:33 pm, edited 3 times in total.

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11 Sep 2019, 12:33 pm

Poking around in the Spectrum News archive:

Many of the reported studies, at least on the first several pages (as of today), are about hypotheses of the form: Genetic mutation X causes protein Y to be made (or not made), which causes event Z to happen in the brain, which may cause ... autistic behaviors! (usually in "mouse models" with a similar mutation artificially induced).

Two of the most recent Spectrum News articles, here and here, talk about studies that seem to pertain primarily to Rett Syndrome, although the titles of the articles don't mention this. (One of the titles just seems to be about autism in general, and the other one seems to be about brain research in general.) Rett Syndrome, which was considered to be part of the autism spectrum under the DSM IV but isn't anymore, is (unlike autism in general) a degenerative and ultimately fatal disease. That being the case, an all-out effort to cure it is indeed justified.

One could argue that the same is true for the most severely disabling kinds of autism caused by mutations like DNA deletions and duplications. (And I hope that the level of fine-grained biological attention that is the current state of the art is being lavished primarily on those genetic mutations associated with the most severely disabling kinds of autism.)

Nevertheless, as I've said before, the direction this and other recent research is going creeps me out in terms of its ethical implications, not just for autistic people but for society as a whole. As I wrote earlier:

Mona Pereth wrote:
If and when precision brain-tinkering ever becomes an everyday reality, it's easy to imagine how it could be abused by totalitarian governments, and also how parents in relatively democratic countries too would be pressured to allow it to be used on their children to treat more ... and more ... and more childhood "abnormalities" so their children become more obedient and fit in better ... and better ... and better ... and better with corporate culture, etc.

I question whether our society is ethically evolved enough for this level of brain-tinkering.

Another worry of mine is that the forthcoming radical autism treatments may have the unintended side effect of harming an autistic child's cognitive potential. As I pointed out here, it is now known that many nonverbal or minimally verbal autistic kids have cognitive potential that far exceeds their verbal abilities. Alas, as far as I can tell, developing these kids' nonverbal cognitive potential is not even a priority, at all, in today's most common childhood autism therapy (ABA). I worry that their undeveloped nonverbal cognitive potential will be further neglected, as something even to consider in terms of side-effects, when radical autism medicines reach the clinical trial phase.

I'd feel a lot better if the amount of money being spent on genetic brain research were paired with at least an equal amount of money focused on research into educational and therapeutic methods focused on autistic children's cognitive development -- by which I mean much more than just language development, although the latter doesn't receive anywhere near enough attention either, in my opinion.

For that matter, I'd like to see the same thing done for kids with ADHD. Currently, standard practice is to give these kids highly addictive stimulants to enable them to fit in with today's (historically very anomolous) public educational machine.

IMO, in today's world, surely it should be possible to adapt the public educational machine to the child instead of vice versa? Indeed, why do we still need traditional classrooms at all? Today, in the era of computers and highly attention-grabbing social media and smartphone apps, surely it should be possible to develop educational software that is just as attention-grabbing for children (even kids with with ADHD, many of whom do have the ability to hyperfocus) -- and that can be customized for each child. In such a system, the teacher's job would just be to monitor each child's progress, customize the apps to the child, and give additional tutoring where needed. Only the most severely disabled ADHD kids would still need to be medicated.

Given today's technology, there is no longer any excuse for "Quiet Hands!" to take precedence over an autistic or ADHD child's cognitive development.


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12 Sep 2019, 1:48 am

Hi guys :D